Collateral Sorrow

Art by Marina Powdermaker


It’s been a time of times, a steady landslide of uncertainties. Yes, the Covid, the shutdown. Yes, Bink and so many other adults with disabilities being home all day every day for many weeks, with all the usual programs and activities canceled. Yes, the mass suffering and loss that has accompanied this pandemic around the globe. Like so many others, I’ve been all over the place emotionally and mentally.

All that has paled, though, in comparison to another great big unfolding. Marina, a dear friend of mine, has been diagnosed with a rare and very aggressive cancer. Stage four. She lives in a different state, and I haven’t been able to see her.

The news about her condition came at about the same time everything began to shut down. In a dizzying 9.5 weeks she has been through a surgery that was far more extensive than she expected, dealt with the after effects of that with multiple pain medications that haven’t worked very well, grappled with treatment plans. Each subsequent appointment with specialists has brought grimmer news, with predicted possible life expectancies going from a possible two years down to months. Yesterday a doctor told her that if she opts for no treatment at all, she may only have “days to weeks.”

She had a chemotherapy port installed in her chest, but crippling daily and nightly pain led to more diagnostics, and then confirmation that the cancer has spread into her bones. Radiation, which can’t begin until next week, may help the pain but will delay chemo. The first available chemo appointment may be almost two weeks away. She’s been told hospice is not an option if she opts for chemotherapy. Can you imagine riding on this monstrous roller coaster, exacerbated by Covid complications that keep her from close contact with those she loves? If ever there is a time someone needs hugs and loving touch, this is it. Her beloved cats, whose affection has been balm to her, had to be rehomed due to her inability to care for them.

During this turbulence, Marina, who has given me permission to tell you about her, dipped into Laurie Wagner’s free offering of her Wild Writing course. Each morning for 27 days, participants received a video of Laurie reading a poem, and were encouraged to use the lines as a prompt for free form writing. I’ve yet to take one of Laurie’s courses, but I’ve heard many good things.

Marina is a multimedia artist. She’s never considered herself to be a writer. During the Wild Writing course, she wrote on the days she could manage it, and she’s shared some of her words with me. Such raw and achingly beautiful writing! I keep telling her I want to see it all on the page, and online, for everyone to experience.

I’ve been pretty blocked (understatement) in my own writing lately. It’s true that my main daily focus has been keeping Bink occupied and well fed and reasonably content. There hasn’t been a lot of time for writing, or editing. My bitchy inner critic has also been strident in her attempts to silence me, and I’ve let her. There have been pockets for painting and drawing, but those creations seem to be content with five or ten minutes of attention in between the cycles of care giving.

There is so much I want to say, about endings and beginnings and life and death and change. If Marina can pick up a pen and allow such fierce and tender writing to come forth in the midst of her great challenges, than I can certainly let some of my own wordy impulses break free and overwhelm the block. I can do this in her honor.

For today, just one more thing. Please check out Marina’s art HERE.
She does layered, amazingly textured pieces that, like opals, look different in every light.

Take good and gentle care of yourself, and maybe go call or text or write someone you care about. Tell them a specific something you love about them. The world and all her people need more love.

–Melinda Coppola

When all this is over…

WHEN THIS IS OVER

Bring bread,
chewy and warm,
wrapped in that red
checkered tablecloth
that always sings
picnic,

which is short for
happy family,
easy friendships,
peace and plenty
in our town
state
country
planet.

We never went on one,
a picnic,
not once in all our
together years

even though we had that red
checkered cloth,
and enough love
and hope
and time.

Bring bread, baby,
while we can still bake
and chew,
while we can still be
alive together,

while earth still
hosts the wheat, the rye,
the farmer, so trusting,
sowing seeds.

–Melinda Coppola

Prospecting for Grace

Praise

The faithful sun,
generously stirring
energies of Earth
and atmosphere,
coaxing every green thing
towards the rising
song of spring.

Parents
walking with their children
outside, smiling
and laughing, nodding
at neighbors
out washing their cars.

Quieted streets
yielding their usual
ruthless noise
to melodious birdsong,
squirrels rustling in the brush,
the wind whistling
in the still bare branches.

Moon, conducting
the rise and fall
of seas everywhere,
the call and response,
organic and lyrical,
in all bodies of water,
even ours.

Every incremental sign
that goodness and hope
are alive and well,
seeding us with patience
through this reckoning time—

There I’ll set my gaze,
invite my pen to praise
all that.
Praise all that.

–Melinda Coppola

The Uninvited Guests

What a time! We are seeing and hearing wide ranging effects of the Covid-19 pandemic on, it seems, every populated part of our planet.

In our corner of the world, Bink’s autism and accompanying dependence on schedules has collided headfirst with current realities. Every activity in her life, from her weekday program to her favored leisure activities, has been cancelled. Much of the structure she counts on has fallen away. Anxiety and perseveration, already frequent visitors in our home, have announced their return. They brought lots of luggage, too, apparently planning to stay awhile.

Will we get through it? Of course. Many have far worse situations. This is, however, a particular kind of challenge for Bink and others like her. She asks many questions, and fully expects me to have the answers.

Longing

to help you know
in your bones, child,
in your bones,
this will pass.

This will pass and
I’m longing
to have you know
we will again be free
to dip in and out
of those beloved scrawls
on your wall calendar—

horse riding,
and art class,
the candy and craft stores,
restaurants,
swimming at the Y,
and your weekly volunteer job
neatening the bins
at the toy store,
pricing stuffed animals.

You will
once again
return to your day program
where you may even welcome
those groups
you do not love.

I know in my bones,
which are just older versions
of your own,
that this will pass by,

all things do,
and we will re-rise,
rise again,
grateful and eager
to push forth into the
too-loud world,

carrying earplugs
and fidget toys,
your soft pink ball
of yarn.

Until then,
my frightened
full grown child,

I will be here,
right here,
to answer your questions,
daily, hourly,

No,
this won’t for last 100 days.
No,
this won’t be for your whole life.

Yes, we’ll go out walking
today
and tomorrow,
and every day.

No
this won’t be forever,
No
I don’t know the day,
the hour
it will end.

Yes,
the power will stay on,

this will pass.
I’m longing
to help you know
this will end.

—Melinda Coppola

Communicable


PROPAGATION

I’ve taken to humming
in the produce section
while caressing the plums,
sneaking sniffs
of the cilantro,
eyeing the lemons,
audacious in their yellowry.

It’s a low, soothing thing,
the thrum of air
over vocal chords,
nearly a buzz,

and I am almost
a bumblebee,
hovering over color,
circling the end caps

as I admire
the mottled plantains,
the papery shallots
with their secret,
chambered cloves.

Outside the store
there are doomsayers
on every sharp corner,
the shattered remains
of a national normalcy
cutting feet,
drawing blood,
speculation,
and despair.

Even the sunlight
serves only to magnify
the sparkle of
all that broken glass.

The lines in the parking lot
seem repainted every night,
with more space
between the spaces,
to keep the usses
from door-dinging
the thems,

but inside
the flamboyant vegetables
nestle up to their neighbors,
fragrant fruits
and bags of nuts
coexisting,

and there I’ll go
humming and hovering,
covertly cross pollinating,
to propagate
a kinder world.

–Melinda Coppola

Harmonious Discord

This morning I walked early,
mismatched garments
layered to repel a cold, spitting rain.

I’d pushed his baseball cap
down hard
over the knitted ear band
I bought to share
with her, which she
most emphatically rejected
for not being soft enough,
or pink.

Featherweight Bean jacket—
the one that lifts me to frequent
if silent praise
for its tireless rebuff
of even the most bitter winds—
warmed me companionably,
its soft arms moving along with mine.

This walking time—
tucked carefully into the space
between my early rising
and her wake up song,
before the gentle time to get up
directive I save for him—
has become sacred
in my other-centered life.

Rounding the first corner
of the favored route,
I looked down
and had to laugh
at mismatched gloves,
one pink and hers,
one turquoise, mine
by default,

and the shoes, laced oddly,
partially, with big gaps
between eyelets three and six

to nurture the well worn feet
whose dorsal surfaces
are temperamental, and
wavy as the sea.

The thought
and the smile
bubbled up together:
I am a walking exhibition
of my pieced together life.

This quilt of a family:
The daughter
with all her needs hanging out,
her talents slowly
coming to light
in explosions of art
and word
and song.

The man who adapted
to both of us,
stepping in, a little
closer every year,
to father her.

The felines,
who sleep tirelessly,
rising long enough
to eat and coat us
with their fur
of many colors.

Middle aging me,
holding it all together,
multi-hued patches of love,
bits of colorful string,
a plush batting of hope.

An ode
to harmonious discord
is not such a bad thing to be,

Said I to self
out walking.

–Melinda Coppola

Brown Girl Hair Has Left the Building

Bink loves girl hair. For the uninitiated, this translates to long straight hair hanging down, on a female of any age. Preferably, the hair should be visible equally on the right and left sides of her head.

I’ve had long brown hair for 25 of my daughter’s 27 years. At one point, it grazed the small of my back. Bink loves reaching for a lock of my hair, especially when she gets up in the morning, when we part and reconnect during the day, when she is feeling anxious, and before she goes to sleep. Brown Girl Hair has even become my sometime moniker. Superguy has been known to refer to me as BGH (for short) in his texted or emailed communications with Bink, or when he addresses me in a birthday card.

In addition to being Brown Girl Hair, I’ve also been identified as Gooey Oyster. That means soft, smooth, silky hair in Bink’s world. Through no fault of mine, she loves raw oysters. And, to her sensibilities they are smooth and silky soft, like my hair. So she’s used the Gooey Oyster identifier along with Brown Girl Hair for some time.

Bink would prefer my hair down all the time, but my life is rather active. When I am cooking, cleaning, exercising, teaching (or doing) Yoga, caring for the cats and many of my other miscellaneous occupations, it is much easier and more practical to tuck it all up into a quick bun. This has led Bink to write, “You are not bread.” on napkins and leave them around the house for me to see, or to record into her tape player, ”Mom should not have a bun because she is not bread.”

We have been known to negotiate. “Hair down?” she’ll ask. “I’m cooking,” I’ll respond, perhaps for the fifth time. “Hair down at 4:40?” she’ll say, with an edge of faint hysteria in her voice. “I’ll put my hair down at 5 o’clock.” And so on.

I’ve loved hosting long hair at many points in my life, and other times I’ve tolerated it. Snarls happen easily, and the high-quality conditioner and combing in the shower precedes the two hour drying process. No hair dryer, except for the bangs. I’ve no time or patience for the tedium of all that hand-held noise, and it’s not good for the hair, either. There’s also the impracticality of having my long—albeit soft and shiny, gooey oysteresque—locks hang down and hinder my free vision or motion. Worse yet, it can inadvertently get dipped into a pool of mystery goo on a counter, or catch some errant cat food as I bend to clean up after our messy felines. Sometimes, I’ve found myself feeling tired of the process required to maintain all that girl hair.

I’ve broached the topic of Cutting It many times with Bink, who has reacted with a variety of expressions of displeasure, anxiety, and horror. When asked what she loves about her Mom, Bink will inevitably say, ”Her brown girl hair/gooey oyster.” I’ve often joked that, if I cut my hair short, my daughter would be in the market for a new mom.

She grows older, though, as do I. Signs of flexibility and maturity have been showing themselves in the past few years, particularly as Superguy and I push the envelope more. We are, after all, in the service of helping her become more independent, given that there will come a day when she will have to live without us. (Deep, heavy sigh inserted here. Topic of another blog post, or another fifty of them.)

I’ll be fifty-nine in a few months. I’m keen on decluttering my calendar and my environment. I have never been more aware of the need to make room for the things that really matter, like good health, and quality time with beings I love, and for the book that needs to gestate inside me. A new yen to Cut It Off began to make itself known in the past month or so.

Cue new consult with Superguy and Bink. “No,” she said. “Not above the shoulders,” said he. I reminded them gently that, despite evidence to the contrary, my hair belongs to me. And I was ready to cut it.

“It won’t be super short,” I assure them. “But I am getting it cut. I will let you know when it is going to happen, and everything will be OK.” And, you know what? It was.

A few days later, just before Christmas, I walked into a hair salon I’d never been to and plopped down my 25% off coupon. I told the lovely lady wielding the scary looking scissors that I was ready for a change. “But, not too short. And, I’m not a high maintenance type. I’m not going to put products into my hair and spend time in front of the mirror blow drying my mane into submission. And, I still need to be able to put it back, or up.” And then I let go. Kind of.

That afternoon, I picked up Bink from her day program wearing my new ‘do. She’d been warned, and after her name was called she peeked anxiously around the corner to assess the damage. Then she trundled towards me and put her hand up to touch my shiny, freshly-blown-out hair that would probably not look that stylish again until or unless I visited a salon.

“It’s still Gooey Oyster,” she said, and my heart got all melt-y and began to drip big blobs of love and appreciation all over the Pergo floor. My girl was doing her best to find a positive in this situation that she’d been dreading for years. Though Superguy and a few select others would have some sense of what a big deal this was and is, only I knew the true magnitude of that moment in the lobby of her day program. It could so easily have gone a different way; and it didn’t, because she is amazing and wonderful and she is growing and changing and she defies expectations more often than I probably give her credit for.

Bink is used to it now. She informs me at least daily, ”You’re not girl hair but you’re still gooey oyster!” Only twice has she wondered aloud if I’ll ever have girl hair again.

I do feel inclined to tell you, reader, that my hair is not actually short in anyone’s estimation except Bink’s. I had about six inches cut off, which leaves me with layers that end below shoulder level. It’s easier to manage this length, for sure, but I also feel benefits beyond shorter drying time and fewer tangles.

Bink’s willingness to bend and her ability to adjust to this big modification of one of her major comfort items leaves me feeling hopeful and proud, and lighter in more ways than one.

–Melinda Coppola

Imagine the Harvest

Mercy

What if we had drills,
not just for disasters, fires
and hurricanes, not just
for active school shooters
and any possible terrorisms
both foreign and domestic,

what if we had rigorous
training in kindnesses:
how to recognize them incoming,
start a volley with the perpetrators.

Imagine preparations
for frequent barrages
of mutual respect,
muscle building
and visual exercises
to increase aim with
arrows of understanding,
rehearsals in how to see
oneself
in another,

and, at last,
commonwealths of decency
brigades of beneficence,
great infantries of amity,

drilling to hone skills
of making, and giving,
and keeping,
peace?

–Melinda Coppola

My Daughter, the Foodie

The Pies by Bink

Bink loves food. In fact, her relationship with it goes far beyond what tastes good and satisfies her hunger. She loves looking at cookbooks, finding recipes on the computer, and watching cooking shows. The painting subject she selects for her weekly art class is often something edible. The paintings on our walls at home, and the stacked finished canvases along the baseboard in the living room, depict pies, ice cream sundaes, candy apples, oysters, brie cheese, jars of pickles, and other things that make her mouth water.

She enjoys cooking and baking. Although she needs the substantial assistance of another adult and takes frequent breaks, her enthusiasm about picking recipes and helping to make them is always high.

One of my favorite observations about this love affair Bink has with food is the photography it’s generated. The girl takes pictures of everything she eats, or finds appealing. That “everything” means every rendition. If she tastes her own meal or snack and finds it lacking, she has learned to say, sometimes, that it needs more salt, or sweet, or some vinegar. Once the missing taste is added, she’ll take another picture. The food on her plate may look exactly the same as it did a few moments before, but to her it is quite new.

A definite omnivore, my daughter wouldn’t dream of eating pedestrian fare like hamburgers, hot dogs, French fries, or chicken nuggets. I certainly have no problem with her avoidance of those foods, and I do celebrate her widening palate. When she was three years old, she went through a phase where she would eat only blueberries and dry Cheerios. Neither is on her Yes list now. So, what does she eat?

Bink is attracted to the spicy, the sweet, the pungent, and the pickled. In her relatively short life, she’s enjoyed an enormous variety of comestibles that you’ve likely never granted transport across your own lips. She once had Ostrich Carpaccio with her father when she was about ten years old. She loved it, as she has also relished occasional octopus, eel, braised rabbit, many kinds of lamb, a rainbow of pickled plant life, anchovies prepared a number of ways, and a small variety of dried spiced crickets. She salivates at the thought of raw oysters and enjoys Teriyaki seaweed and ostrich jerky as a snack, when available. Very, very few of those things have made it onto my plate.
Most ethnic foods are yesses, especially Indian, Moroccan, and Japanese. She also loves many of the Korean delicacies her dear Aunt Young makes for her. Think homemade Kkaennip Jangajji (pickled Perilla leaves) and Japchae ( spicy glass noodles with vegetables).
Over the years, I’ve honed my cooking skills to suit her palate. Eggplant, bell peppers, smoked duck, goat cheese, and the above-mentioned lamb, are generally high on my own list of Will Not Eat. Still, I can handily transform them into dishes with an Indian, Chinese, or Japanese twist for my gourmet daughter.

Bink takes her lunch to her day program most days, and we plan those lunches together. On Saturdays, she’ll decide what she’d like to have for her lunches during the following week. We shop for the ingredients on Sundays, and cook more or less together most Sunday afternoons. Bink favors warm lunches, so typically she’ll take a lidded ceramic container of soup or stew, along with a side of something pickled or some sticky rice chips, and water. Yesterday morning, however, we had to cobble together a cold lunch, as her day program was headed to Newport, Rhode Island, wouldn’t be back in time for her to heat her lunch. She and I managed with anchovy fillets, some of my recent batch of zucchini pickles, Kalamata olives, and some coconut sticky rice chips, each of those foods nestled into a little Tupperware container. The beverage is always water, which makes it easier.

One of Bink’s quirks is that her food preferences can turn on a dime. When she requests something, it can come from memory, or from perusing cookbooks and The Food Channel. Sometimes, she’ll get very excited at one of my (or our) creations, and will eat it with gusto until it’s gone. Other times, she’ll enjoy it once or twice, and then I’ll get a text during a weekday, or she’ll announce at dinner or breakfast,” I’m tired of ______ (that thing that took two hours to make). ”

On rare occasions, we can negotiate a way to doctor the taste of the food with a seasoning or sauce, and she might deign to try it again. Often, though, she will not touch said food again, at least for a few months. So, we might end up with a container of some very spicy eggplant, or a soup that tastes and smells like strong fish sauce. I really don’t like to waste food, but Superguy and I just don’t have the stomach for some of Bink’s choices. We do know a few hardy souls who enjoy some of these things, so we can share some of the cast-offs as well as the excess from my more successful creations.

I’m well aware of how fortunate we are to be able to offer this quirky gourmet a variety of things she enjoys. It’s important to me that she eat as well rounded a diet as possible, and I have come to enjoy a little adventure in my cooking. Also, not all of her preferences are expensive or unusual. She likes particular pizza from certain places, and she’ll sometimes enjoy garlic bread and simple vegetable soups. Raw carrots are in occasional favor at the moment. She really likes sweets and baked goods, though she limits them to once a day and generally writes four NO TREAT days into her wall calendar. That last one is a story for another time.

Next month, Bink will turn twenty seven. Some kind friends, a family with a wonderful adult son who is also on the spectrum, have invited us out to dinner to celebrate in a few weeks. Bink is already anticipating an order of creamy raita, with just the right amount of tamarind and mint sauces mixed in, to savor with her Peshwari naan. She’ll probably share an appetizer of vegetable Samosas with me. Then there’ll be some kind of spicy lamb dish, and perhaps she’ll have a little of whatever curried vegetable there is to share. For dessert, she will be delighted with some cardamom scented Kheer (Indian rice pudding) or sweet sticky balls of rosewater infused Gulab Jamun.

Truth: Just now, on this Wednesday midday as I sat editing this piece for the blog, Bink called me from her program. That doesn’t happen too often, and usually it means Something Is Wrong. What was today’s message? “ I’m tired of the lemon risotto. Lunch I want balsamic mushroom barley soup tomorrow.” And so it is. Would anyone like a serving of perfectly good parmesan infused lemon risotto?

–Melinda Coppola

The Melting Popsicles by Bink

In Plain Sight

Deus Occultatum

Love sparks
and cells cluster,
forming flowers and rainstorms,
people and evergreens,
calling bees
and grasshoppers
to song,
squirrels and deer,
to dance.

Love lifts the paintbrush
to the canvas, parts
the lips of the singer,
fills the page
with poem.

Love is present everywhere;
not just at all those arrivals,
all that coupling and multiplying,
as some would have you believe.

The woman opens
her mail on a Tuesday afternoon,
receives her divorce decree.
The heaviness in her chest
isn’t simple grief.

Love has landed there
in her heart, and
hope will grow
in the places Love touched.

Afghanistan, a young
soldier has a leg
and half an arm blown off
in an IED attack.

He begs to die,
but Love knows
the names of his future children,
keeps him breathing,
returns him to his fiancée.

Love stood by as three
different cancers thrived
in your father’s body,
and when it was
at last time
for him to go,
it was Love
who took his soul’s hand
and guided him home.

—Melinda Coppola